Sunday, May 30, 2010

We had the pleasure of enjoying a sunny Memorial Day weekend with Nana and PopPop in town. We spent a lot of it outside, which is a new thing for us.

Last year, Elena could NOT navigate grass. At this time, E can navigate most surfaces (grass, gravel, large stones, wet surfaces, dirt, small roots, mulch) using her loftstrands, depending on her energy level for a given amount of time/distance. She can travel all these surfaces, on a mild incline or decline, about 100 ft before she needs a break.

That's a big improvement from last year, which is super fantastic!

This past weekend, though...we found another obstacle to being outside.

HEAT.

Since E's exposure outside was limited due to terrain, we never thought about how the summer heat would sap her energy. We even signed her up for a week-long day camp right when school lets out--thinking how she'd LOVE being outside, and would love to be around friends. Then we went to visit. The staff was great, the terrain very difficult--but the biggest issue out there for her endurance isn't just terrain. It wasn't even hot out yet, and she was d-o-n-e after 45 minutes (the camp isn't air-conditioned). We went to a park today, where she was in a stroller most of the afternoon, used her crutches for 50 paces, and walked maybe another hundred feet in total--and she looked terrible. Her gait was distorted, she dragged, her limbs heavy from exhaustion. The temperature high was 88°F, and we were out for no more than 4 hours, half of it in shade, and E was well-hydrated. As a comparison, Vivian (18 months) ran all over the place, the entire time, red-faced but energetic.

This is good information. I don't feel disappointed--but I DO feel like I've learned something very important (besides the fact that E isn't ready for day camp).

Our Summertime Goal (in a nutshell): For E to spend more time 1) playing outside, 2) playing with other kids WHILE building confidence and strength.

Monday, May 24, 2010

We've been focusing on stopping at PT for a while. Elena can now walk a reasonable distance in a forward direction. Her stopping ability is not reliable. This is a huge issue when other elements are added to the walking problem; other people, objects on the floor, no handholds (for instance). E also tends to reach her destination by stopping short and leaning onto an object (wall, table, person, etc.).

We are trying to teach her to walk to her end destination (end of hallway, for example), STOP, then touch the wall. We have had countless falls because she stops short and leans for a handhold for balance, only to miss it, or have the handhold move (door swinging, etc.).

E is definitely better at stopping when wearing her AFOs and shoes. She still leans for walls, but overall she can stop in the middle of a room and avoid falling or running into people. With her sneakers (sans AFOs), this still needs a lot of work, but this skill is definitely emerging.

Friday, May 14, 2010

We had Elena’s IEP meeting this week. I was very, very nervous; I know a lot of parents of special needs kids really have a hard time with public schools when it comes to education, safety, and inclusion of their children. Our experience has been extremely positive, since the beginning.

Still, every time I go into a meeting, I can’t help feeling that we’ll be dropped, just when we need the help more than ever.

At the heart of the matter is the fact that Elena is a smart girl who moves poorly. The public school system will provide services (PT, etc) provided they are required for Elena to succeed academically. I had been warned by our school PT that Elena would probably not qualify for services in kindergarten. She wasn’t being mean—she was trying to prepare me for the inevitable future. My worry was safety—Elena goes to the school nurse A LOT for falls; kindergarten is the first time the kids really integrate with the student body, and travel all over the school for classes on a daily basis. Both of these would result in greater fatigue, more opportunity for injury related to navigating through a crowd of people. Now, I understand that a little PT during the week isn’t going to magically evaporate those worries, or make those gross motor hazards vanish. Neither will an IEP. But with an IEP, the school is legally obligated to accommodate Elena, to keep progress reports, to keep me informed, and to problem-solve related to keeping her best integrated with her peers. I am lucky that I have a great team of educators who are genuinely interested in doing these things for Elena without a document obliging them to do so. But the threat of changing Elena from an IEP to a 504 scared the crap out of me—a 504 is also a legal inclusion statement, but there is no paper trail, no progress report, and it varies from school to school—so in short terms, everyone could be compliant with the 504 and basically do nothing for Elena, and I would have very little recourse. Teachers these days have TONS of paperwork, for typically developing students; kids with IEPs have lots, lots more, and I understand that extra work is not trivial.

Prior to E’s IEP meeting I consulted a lawyer. Basically, I wanted to prepare myself if I had any legal standing for making them keep E’s IEP (even if she didn’t qualify for services). I didn’t really get that far…I know that everyone (including E’s educators and myself) have to agree to the IEP plan, including termination. I decided I was not going to sign if that was the decision; at least, not until we got to observe how Elena was adapting to the pace of kindergarten. I cannot demand that Elena receive PT in school, that is up to her educators.

I didn’t have to think that far ahead. (whew!)

Our meeting was two hours long. We discussed Elena’s progress, and how she is doing presently with her peers. I was very, very pleased. The school PT was very impressed with Elena’s progress, and believes most of it was due to her SDR surgery last February. Elena can use a standard bathroom, with the rest of the girls in her class, unassisted (unless she is wearing a dress or skirt). She navigates the classroom independently, without assistive devices. She can get up from the floor on her own, without using a handhold (although she often does). She is independent during lunch, provided she sits with support under her feet (90-90-90 seating arrangement). She brushes her own teeth after lunch. She can carry some objects around the classroom. She is academically on target with her peers, and is a bright, social, engaging child, who wants to do things on her own but is willing to ask for assistance (normally after trying it herself).

Elena’s disability affects her schooling because her walking speed is significantly slower than her peers, and assistance is needed to ensure she does not miss instructional time. She requires assistance at all class changes, as well as boarding bus transportation (she takes the Special Ed Bus). An aide takes a stroller to/from recess; Elena typically uses her loftstrands to recess, and rides a stroller back to the classroom after recess ends. The playground is hilly, and she requires assistance to navigate it. On field trips, she requires wheeled transportation (stroller). She requires extra time to transition to any classroom or activity outside the main classroom.

I asked what the transitions were on a typical kindergarten day. Not counting bus arrival/departure, there are four long daily transitions: recess, gym, art/music, and the cafeteria. These activities are ALL over the school, including one in an outside trailer. My heart sank. She would be EXHAUSTED if she were not given extra time/assistance—and NO ONE wants to give her a wheelchair. It might be convenient, but in Elena’s case, that would literally and figuratively cripple her movement pattern progress.

The staff on a typical day consists of the Kindergarten teacher and one part-time aide. That’s barely enough to keep a typical class together, forget one with a motor impairment. I am still petrified of the cafeteria…E would have to navigate a giant room, with all sizes of kids, not to mention tripping over chairs, backpacks, purses…she’s never carried a lunch tray, or worn a backpack. She’s easy to trip if someone kicks her crutches, or bumps her with her crutches on—falls with loftstrands are messy, even without all the peripheral dangers in a crowded lunchroom.

The IEP team (myself included) thought up a plan and put it in writing. It’s a legal document. The document can be rejected and revised; this hasn’t happened in this county for 25 years. I’m going to start referring to my IEP team as The Dream Team!

Here’s the bottom line:

Elena needs a full-time aide (this means they will have to hire/dedicate a person just for E). She will require extra time and assistance between all school transitions. She is expected to use the bathroom independently. She will have a stroller, if she wants it, at least in the beginning of the school year (I will provide one of my choice…I am leaning toward a sit-and-stand style), with the goal of transitioning completely to her loftstrands or independent walking by the end of the kindergarten school year. She will receive 30 minutes of PT in school per week, with consultation 30 minutes/month (probably more in the beginning of the school year in case accommodations are needed). E will continue to use modified seating arrangements where needed (90-90-90, typically this means a footrest). She will have Adapted Physical Education where need be; the PE teacher is quite inclusive and is very good with children with special needs. Elena will gradually learn to carry a backpack, lunch pail or lunch tray (the PT is excited to work on this throughout the year), and is expected to be close to independent in the lunchroom at the end of her kindergarten year. There is a petition to make changes on the playground (bright paint on the walking path so E can see it, and kept clear of mulch to reduce fall hazards).

Monday, May 10, 2010

We started it off with a trip to Short Pump with our buddy Oia and her family. It was just me and the girls; Oia's mother and father both met us, which was crucial, b/c I cannot handle both kids on foot, outside the house, and keep them safe (E needs supervision, as does Vivian, who now moves too fast to keep the group together). Our arrival excitement was subdued when we had to get back to our car and found THIS and I could not get the door open (yes it is parked in the space between two handicapped parking spots, and there was a car occupying each space). I was SERIOUSLY ANGRY, ready to be completely inappropriate around my children, if the driver of that car was anywhere nearby. I went to get him ticketed--I didn't go back to the car again for hours, after which the car was no longer there. For the record, unless you are having a baby, a heart attack, or some other health emergency, that is NOT EVER OKAY. And if you are the driver of this car VA LICENSE PLATE XMH-5052, or know who is, I have some choice words for you.

Ahem. Moving on,

We played in Pottery Barn Kids and rode the toddler train, which Vivian apparently likes to ride standing up on the seats. It was a gorgeous day and everyone had a great time, until Vivian lost it (after naptime) and we had to go.

The Girls Playing at PBK

Right before Viv's meltdown: E and Oia (and Oia's parents) walk to the Toddler Train. This is the first time E has walked any significant distance while holding a friend's hand (without falling). What a great gift. Vid is here (it's super short).

Sunday, Mother's Day, was special indeed. Jason took E to Yoga, and I put Viv down for a nap and did nothing. I just dorked around on the computer, ignoring chores, dishes, all other kinds of mess, and drank my coffee while Viv had her morning nap. After lunchtime, Jason and I packed up the kids for the soccer field. It was the last game of the season for my team, and the first time both my kids were at the field with me this year. We brought two cars, thinking that once the kids got too difficult to handle Jason would take them home. We also brought E's new lawn chair (pink, complete with umbrella) in case she wanted to sit. She did--she wanted to be my cheerleader. And was she EVER! She was LOUD, cheering her head off, even when nothing was happening on the field. It was adorable. Jason spent the entire first half keeping Vivian from running onto the field. Once the halftime whistle blew, Viv ran to me. It was awesome. She ran to me, yelling "MA!! MA!!" and a huge grin on her face. I realized that I was the only mother playing that game, on either team. Pretty darn special. Jason and Viv left after halftime; E and I played some soccer until the start of the second half. She sat back in her chair, and cheered us on to a great win! After the game I took us to get mini-slurpees, and she even carried her slurpee cup (with lid) to the checkout, stopped, and stood holding it until it was our turn to pay. She was very proud of herself.

I went to work, and then we all went out to dinner, spur-of-the-moment. It's difficult going to a nice meal with two young kids, the younger of which has a very short attention span at the table. Still, we're used to it, and it was a great meal with the best company.

I often think about how much being a mother has changed my life. It's revolutionized my life. I thank E in my thoughts often for first making me a mother...for showing me unconditional love, support, courage, resolve, and appreciation for life. I thank Viv often in my thoughts, for letting me see all those things, only with less work upfront and more chasing. ;) I am thankful for my Mom, daily, for giving me a great example, and reminding me of what is truly important.

I am very proud, and very blessed, for being Mommy to two amazing girls.

Friday, May 7, 2010

Elena LOVES water. Our gym has a heated non-chlorinated pool, which is our favorite. We also like going to the neighborhood pool in the summer, but that has a whole host of other issues: moving around with bare feet, spasticity in cold water, not keeping up with peers, inability to jump into the large pool from the side, foot/shin/knee scrapes from the baby pool, to name a few. Still, we love it.

I took E to the heated pool yesterday; I wanted to post some observations here, in the hopes that you might have some helpful comments and to see how much she improves with time.

1. E's righting reflex in water is poor. Meaning, if you hold her by her hips/thighs, and she is in the water belly-down, she can accidentally (or intentionally) turn on her side and she doesn't know how to get her head back up out of the water. Obviously I am there to help her, but other kids will twist their bodies to keep their head upright. Elena does not have a problem with head control, in general. Her core is weak, true. I am hoping with instruction and more water exposure this improves. I do not have her wear a life vest/jacket in the pool, b/c even with it on, there is no guarantee that her head/face will be upright.

2. If Elena is sitting on the side of the pool edge (feet dangling in the water), if I ask her to come to me, she basically "stands up" on her toes--meaning when she comes off the side of the pool, if I am not SUPER CLOSE to catch her, her body falls into the water in a line just shy of the edge. This is begging for a head injury as she enters the water, especially in a pool with a "lipped edge". I am trying to get her to reach out, forward, into the pool, so her belly hits the water instead of just sinking like an iron bat lengthwise. This made more sense to her when I put her on the edge, sitting on her knees and asked her to reach for me. I also pull her arms forward with one hand, while holding her legs to the ground to show her what it should feel like to reach forward. She says she understands but isn't able to do it alone.

3. Elena is not afraid to put her face in the water. She enjoys blowing bubbles.

4. She is not afraid to be on her back in the water, if she feel secure with the person with her. Water in her ears on her back feels weird and she stiffens up, but can relax on command.

5. If I ask her to kick her feet, her motion is as if she was crawling on the floor--bending the knees and moving from the hip. She does not kick "below the knee". We haven't really worked on this much yet.

6. She has the motion of doggie paddle with her arms (and legs, if you count the crawling motion) but her fingers are always open. She'll have a hard time swimming if she doesn't learn to keep her fingers together, like a "fin".

7. She can reach ahead of her well with both hands, together or individually.

In her typical fashion, when startled, excited, cold, or frustrated, her instinct is to become like a stiff board with pointy toes. I do have faith that she will be able to swim one day, in a pool...the added dangers of the ocean waves has me concerned, but I'll worry about that once she's an independent swimmer.

We will be going to the beach in late June...anyone have ideas for moving in sand? I really don't want to ruin her loftstrands. We do have sandals...and there's always holding hands. If anyone has a suggestion as to how to help E move upright, on her own, in sand, PLEASE comment or email me cpmom2009 AT yahoo DOT com

Wednesday, May 5, 2010

E was great at PT last week. She started it off by pulling a toy into the therapy room. This is a short video--but check out this POSTURE! No AFOs, standing very tall! Note this is NOT E's usual position. Normally her knees are bent, and her right knee slightly caved in (you see this is in the video too). But she CAN stand very, very nicely!

Here is E doing another obstacle course.

And one on an incline--this is a long movie. I am there as a spotter in case E falls. I'm also trying to observe how Theresa helps operate E on an incline/decline--this is something I have not had the courage to try at home. Inclines would certainly be easier if E's tendons weren't so tight!

Theresa ended the session with a few walking drills for E. The object was to stand up, carry a car across the room, STOP, and slowly bring the car to the starting line. Then she was to stand up, walk back to the other car(s), STOP, and repeat with the next cars--a total of three cars, one for each of us for a car race. Elena's main issue here is stopping--she cannot reliably stop her forward walking motion wearing her sneakers without AFOs. She can reliably slow down, as she falls to the floor.

Saturday, May 1, 2010

Well, you made it, you're 5 years old! You said you are different now; that 5 feels different, the morning of your birthday, the minute you woke up. We are all so proud of you, and thankful we got to celebrate your birthday with you.You are well on your way to doing everything by yourself, just like you said you would. You are really getting to be a big girl! Your little sister Vivian constantly follows you and wants to be like you--and be liked by you. She loves you more than "seventy-five universes". We all do.To put it simply, you're an inspiration...to me, to your family, and to a lot of other people. You get frustrated with yourself--but patience is something that might take longer than your 5 wise years to learn. We will help you. You will walk in the sand, ride a bike, jump into the pool. You will run a race, score a goal, climb a hill. None of it will be easy...but we will celebrate with you, for you, about you, every step of the way.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.